I posted this to a Modified Atkins Diet for Seizures (MAD) Support list that has been a Godsend for me in response to a Mom who posted Ref. Being Disheartened... My response:
Tea Mails are my "Pour a cup a tea and relax a moment" (aka I'm going to ramble a bit, ya may want a drink while reading LOL!)
The way I see it per se is this, we've lived through what many can't fathom let alone begin to understand.
We've learned more medical terminology and specialties that many Drs don't touch upon during their entire careers.
We've not only thought outside box to find whatever answers, hints, potential clues even... That you wouldn't find us near anything that slightly resembled a box-like shape ;)
With that being said... And on a more serious note...
If anyone were to say they weren't disheartened along the way... Hmmm I'd be up to challenge that... 'Cause how could any of us *not* be... The beast we are fighting is something that truly no one has the answers as it effects each of our children, and adults to the point each are unique with not only what can trigger but what type and/or duration of seizures it may trigger (or not) etc.
We are in essence life long detectives racing to solve this mystery that in many cases robs our children of their very life, the life we dreamed of while expecting them, adjusted a bit once the first gutting blow of a diagnosis hit, and so on and so forth... and we all just don't speak of it. Instead we run a grueling race just as fast and hard as any marathon athlete, because we are keenly aware that the ultimate price that could happen if we stop searching, doing, or solving the puzzle each teeny, tiny piece by piece, is an unspeakable tragedy and the beast has no mercy on whom it chooses to rip from us in a blink of an eye...
So we hold on tight with every fiber of our being, at a cost that will and can never be totaled, and cling to our magnifying glass with all we have in the very core of our beings to solve our loved ones mystery of...
God is it... Or was it... Or perhaps it could be...
Ultimately we all secretly celebrate each and every seizure free moment, pray for the seizure free days, weeks etc. Truth be told we all secretly sometimes don't speak of even *those* for a fear of "jinx-ing it" or such... Also almost as equally disheartening :(
I have always said, and will always say you must go with your gut... (No pun intended) if you think you need to go pure, change timing, let your loved one sleep in, or any other "feeling" you get that may, (or may not) be the next piece... Its always a piece, just were it fits or when... We haven't quite gotten the full clear picture to cheat from yet...
We're all working on it and some way, somehow we will continue to do so until we get the answers...
We will get disheartened, we will get weary, we will have many days of a multitude of emotional turmoil, but what we won't do is give up.... Not while a breathe is in us to breathe.
Nor will we stop helping and supporting others on the same journey... as in doing so we too are carried.
(((((All))))))
Love yas!!!
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